North East children with cerebral palsies receiving different levels of care

Stephen Idle on his new trike, with his mum Helen Scott, Tommy Wanless (centre) and Jack Dixon, from Speedflex Gym in Jesmond

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Children with cerebral palsy are receiving substantially different levels of care according to new research from North East medics.

The quality of support offered to patients and their families varies across the North findings published today have revealed.

The new study, led by researchers at City Hospitals Sunderland NHS Foundation Trust and Newcastle University, found stark variations in areas including access to MRI brain scans, access to surgical expertise, and monitoring of pain.

Examining the records of 389 children and young people with cerebral palsies who were born in the North of England, researchers found that over a third of children never received an MRI brain scan, which is important for understanding the cause and prognosis of the cerebral palsy. Although MRI provision did improve over time, the difference between areas was dramatic, with over 90% receiving an MRI in the best performing area, compared with less than 10% in the worst performing one.

Similar disparities were observed in the management of pain, which is known to be an especially important influence of quality of life for children with cerebral palsies.

Dr Karen Horridge, consultant disability paediatrician at City Hospitals Sunderland NHS Foundation Trust, and who led the research, said: “There are always going to be areas where there’s room for improvement, but these findings show really alarming levels of variation across a range of factors.

“We looked at a number of key standards of care, and found that many children were missing out. Every disabled child deserves the best opportunity for the best outcomes, but that doesn’t seem to be what was happening, at least not for children with cerebral palsies at the time of our study.

“No child should be left in pain. We clinicians and therapists must proactively ask about it at every consultation and where present, make robust pain management plans.

“We urgently need the development of national and international guidelines, and for those guidelines to be backed-up by policy”.

Mum Helen Scott, 34, said: “We did not seem to have that much support while we were trying to find out what was wrong with Stephen, however, once he was diagnosed things got better. He did have two MRI scans.

“However, I do think there should be more support out there for parents. We found out more by going to support groups than through medical professionals.”

The study also examined whether children and young people from deprived communities received poorer care than their more advantaged counterparts and found, among other things, that they were less likely to have had a documented discussion about their levels of pain.

The areas of variation included whether an orthopaedic surgeon was routinely involved in the care of those with the most severe movement disorders.

Judith Rankin, professor of maternal and perinatal epidemiology at Newcastle University, is co-author of the study.

She said: “The data used for this important study was derived from a long-standing, cerebral palsy register.

“Unfortunately, it is not currently possible to replicate this study in other areas of the UK as these data are not routinely collected.”

A detailed breakdown of the results has already been shared with health workers across the region, so they can compare their own practice to that in other areas. This is hoped to catalyse reflection, discussion, and improved care.